Discussions By Condition: I cannot get a diagnosis.

If I'm way out of line here, someone please tell me and I'll back down. I feel that my family experienced a HUGE delay in finding out my grandfather's diagnosis, but maybe it really does take 5+ weeks in other hospitals as well. I really don't know how it could take that long (I work in a veterinary pathology lab myself, so I know what procedures would have slowed the progress down and 5 weeks seems excessive) but maybe it does.

My grandfather had a GI-mass which was suddenly just found back in June. 5+ weeks later, his doctors (finally) had a diagnosis. Sort of. They were fairly confident it was Burkitt's lymphoma, but the biopsy sample was small and damaged, so the diagnosis was less than 100% accurate. Also, this was the 2nd biopsy attemp (both bad samples, imagine that). The 2nd biopsy wasn't taken until late in the 3rd week. The first biopsy was completely non-diagnostic, so then they waited 2 weeks before taking the next one.... (no explanation for THIS delay).

Week 4 (Mon. or Tues.), the diagnosis came in from the outside diagnostic lab (Burkitt's lymphoma). No treatment options were discussed/arranged with his doctors in the hospital until the end of the 4th week (Sunday), at which time they decided to begin chemo the next day (Monday).

The tumor progressed this whole time, and there were obvious changes in my grandfather's health plus several more abdominal tumors were now visible. I wish my family had been more assertive with the doctors from the beginning, but the doctors got angry when they asked certain questions (they didn't want to answer).

Anyway, I'd like to know if anyone else has been (or knows someone) diagnosed with Burkitt's lymphoma (adults/elderly especially) and what experiences you/they have had.

1 Replies:

Diagnosis of lymphoma is a highly specialized and difficult area, so it is not surprising that it took a while and input from an outside lab to get a diagnosis. Diagnosis is based not only on looking at the mass, but also on characteristic molecular genetic abnormalities and pattern of cell surface antigen expression; these require pretty high tech testing and you have to have a good sample that is big enough for all the tests. One problem with Burkitt's in particular is that it has a really high cell turnover rate and so often a lot of it can be necrotic (dead) and therefore unsuitable for examination. This may be why the initial biopsies weren't good enough, and it sounds like most of the delay was in getting diagnostic material. It is frustrating but unfortunately sometimes it happens. I am no expert in treatment, but generally Burkitt's is treated more aggressively than other lymphomas, and this can be tricky in an older patient who may have other illnesses that can limit his ability to tolerate some of the therapy.